Withdrawing Nutrition from Children Ethical Within Limits

Action Points

Explain to interested patients that the ethics and legality of withholding nutrition from adult patients with terminal illnesses or in persistent vegetative states are largely settled.

Note that the authors of this statement on behalf of the AAP said that, in addressing these issues in children, cases must be addressed individually and should always focus on the best interests and welfare of the particular child.

Note, too, that halting nutrition and fluids is never morally required, according to the authors.

Explain that the statement said parents or guardians should always be involved in and support the decision.

WHEELING, W.Va., July 28 -- Nutritional support can ethically be withdrawn or withheld from certain children with terminal illnesses or with severe, irreversible disabilities, the American Academy of Pediatrics (AAP) has determined.

The AAP's bioethics committee, headed by Douglas S. Diekema, MD, MPH, and Jeffrey R. Botkin, MD, developed a position statement outlining limited circumstances under which clinicians can ethically halt feeding and hydration in pediatric patients.

"Medically provided fluids and nutrition may be withdrawn from a child who permanently lacks awareness and the ability to interact with the environment," according to a statement published in the August issue of Pediatrics, the official AAP journal.

The ethics panel determined withdrawal of nutrition was also appropriate in cases of terminal illness when nutritional support "only prolong and add morbidity to the process of dying."

Conscious infants with certain severe but nonterminal illnesses that cause intense, inexorable discomfort may also be candidates for nutrition withdrawal, according to the report.

It also said that parents and guardians "should be fully involved in shared decision-making . . . and should support the decision."

Dr. Diekema, of the University of Washington in Seattle, is the AAP bioethics committee's current chairman. Dr. Botkin, of the University of Utah in Salt Lake City, is its immediate past chairman.

The committee undertook the review to clarify how ethical guidelines developed for management of terminal adult patients should apply to children.

The courts and numerous physician groups have supported the authority of family members and other surrogates to stop feeding terminally ill adult patients who cannot communicate and those in persistent vegetative states with no realistic hope of recovery.

But when it comes to children, the panel said, "pediatricians are often uncertain about the ethical and legal propriety of these decisions, the conditions under which such a decision would be appropriate, and how to communicate about this issue with families, colleagues, and staff."

The AAP panel said that current pediatric care uses a "best-interest" standard for determining the ethics of an intervention: "a weighing of expected burdens and benefits of that intervention for a particular child."

It found that circumstances can and do exist under which continued feeding and hydration creates more burdens than benefits for children.

At the same time, the committee emphasized that withdrawal of nutrition is never morally required.

It listed several categories of illness under which withdrawal of nutrition may be the best course. They included:

Children in a persistent vegetative state from severe central nervous system injury or disease

Children in a minimally conscious state

Infants with severe nervous-system malformations at birth such as anencephaly

Terminal illness in which continued survival is likely to involve significant pain or discomfort despite palliative treatment

Infants with severe gastrointestinal malformation or disease leading to total intestinal failure

The panel suggested that, in most cases of persistent vegetative state, continued nutrition does not confer any benefit and may be withdrawn.

But "continued survival might be considered a benefit by the family members, and they may, therefore, choose to maintain their child's medically provided nutrition and hydration on that basis," panel members agreed.

They also said that cases of minimal consciousness -- in which patients have "intermittent" awareness of their surroundings and themselves and can occasionally interact with others -- are difficult to assess.

"Decisions regarding the withdrawal or withholding of medical interventions on their behalf should be made carefully, and caution must be exercised that judgments are not inappropriately influenced by prejudice regarding disability," the panel warned.

Infants with total intestinal failure can potentially live for years on parenteral nutrition, but the burdens of this existence might nevertheless be legitimately viewed as outweighing the benefits, the panel said -- particularly when treatment is complicated by lack of central line access sites or other factors.

Committee members found no persuasive evidence that withdrawal of nutrition and fluids itself may cause significant suffering.

Studies have indicated there is little discomfort associated with a halt to tube feedings, they said.

"In fact, the adult experience suggests that fasting, particularly in the setting of terminal illness, may carry significant benefits that include the release of endorphins and creating a feeling of well-being, ketone production leading to hunger reduction, and clearer thinking," they wrote.

On the other hand, committee members said, there are cases in which continued feeding does create discomfort as well as require hospitalization when home care might otherwise suffice.

In all cases, they said, the child's welfare should be the only consideration.

Although the panel found that circumstances can clearly exist when withdrawal of feeding may be ethical, its legality is less certain.

In particular, the federal Child Abuse Prevention and Treatment Act (CAPTA) states that medical treatment "other than appropriate nutrition, hydration, and medication" can be withheld from children with terminal illnesses or who are permanently comatose.

The AAP committee acknowledged that the exception for nutrition and hydration appears to require that they be maintained in such cases.

Nevertheless, "the AAP argues that medically provided nutrition and hydration are 'appropriate' when they serve the interests of the child -- in other words, when they are expected to offer a level of benefit to the child that exceeds the potential burden to the child."

The panel said its report was intended to define what "appropriate" means. "In that sense, the CAPTA seems consistent with the guidelines provided in this report," the statement said.

State-level statutes and case law may also address care of children with terminal diseases or persistent coma, the panel pointed out.

State AAP chapters and medical associations as well as the AAP's national office can provide assistance in determining the legal situation in a given state, the panel said.

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